Recovery

Okay, I realize this is a little late, and I apologize.

I had my splenectomy Friday, was discharged from the hospital Wednesday, and today is now Friday again, and this is the first post-surgery update I’m sending.  I wasn’t that “plugged in” in the hospital.  I pretty much slept, had tests, and laid there for all those days.  I begged to come home early, and it was a success.  I’m so grateful for the early trip home!

So the surgery… it was a success.  My surgeons were shocked that the spleen inside me was larger than a football, when “normal” is the size of a fist.  We knew it was enlarged, but that big was just unbelievable.  It was so big that they just reopened my transplant scar.  They cut through all of it but a couple inches, therefore not leaving any bit of a new scar.  That was good news to me.  The bad news is how big the incision had to be – I have 40 staples for this, and I had 50 for my transplant.

As soon as the spleen left my body, my labs started increasing.  The white cells flew through the normal limit, and my platelets are actually in normal range.  I’ve never had normal labs since I was at least 5, and this spleen has been an issue since then.  My labs just started  getting worse during the past several months, thus prompting the surgery, a last resort, the last thread of hope.  My surgeon says my labs will stabilize soon.  He’s also having me start taking a tiny aspirin each morning in hopes to get my now high WBCs and few other labs stabilized.

Not sure how life will improve for me since I’m still weak/tired (from surgery, inactivity last week, and now pain pills) and am having huge incisional pain but let’s give it a couple weeks… I hope to feel so great, better than I’ve ever felt before!

Thank you so much for all the prayers, calls, cards, emails, gifts, you name it.  I am so grateful for your love.

Don’t forget the Lifebanc Walk & Run is tomorrow.  Please come if you can! It’s too late to pre-register but you can register at the door 7:30-8:30 tomorrow morning at Blossom.  Details on my site here.  I’m too weak to walk, but I will be there to thank my sweet team members.  Hope to see you there!

xoxo
Amanda 

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Week 2 Begins

Last week….

Monday – MRCP and ultrasound.

Tuesday – Doctor says things are bad.

Wednesday – Too many phone calls

Thursday – Pre-transplant testing and consults

Friday – More of the same

Monday was Memorial Day, and the break was much needed.  After the long weekend, this morning, I met with the hem-onc specialist where he was supposed to prescribe a single dose of radioactive chemotherapy that will later be infused directly into my liver just in case the tumor isn’t benign. Remember, the tumor is in a position where we cannot know if it’s cancerous or benign, so that procedure will ensure if it is cancerous, that the tumor won’t grow. Once a certain size, a tumor can keep you from being on the transplant list.

However, he had a lot of different ideas than all of my surgeons and specialists and needs to do a lot of consulting before everyone decides what needs to be done.  All of this will also need to be gauged along how high on the list I am when I’m officially listed on Friday.  If I’m the top few people on the list, they won’t even worry about trying to shrink the tumor.

After that, we met with Lisa the social worker whom we met Friday, and she wheeled me around the hospital showing my mom and I the Transplant ICU as well as the step-down Transplant unit.  The nurses look great, there’s a lot of support staff, and the ICU is brand, shiny new!  It definitely helped to get an idea of where we will be staying for awhile, and the nurses looked really specialized and competent.

After that, the pre-transplant list rules sent me to the Women’s Clinic for some testing.  I was heartbroken because my doctor’s secretary said she was now only teaching, not practicing, but my nurse practitioner told me she comes in for practice two days a week.  That would have been good to know, oh, maybe a week ago?  Or 3 months ago when I called?  Anyways…

With each appointment or meeting or consult or test, this whole situation is starting to become so real, and I’m anxious just to come out on the other side.

I wanted to publicly thank my mom for driving us to and from the Clinic all of this and last week and for not leaving my side most of last week. I think she’s a little too worried about me, but that comes with being a mom. With a higher power to carry me when I am too weak to walk, I know I’m going to be just fine.

Last night before I went to bed, I asked my mom if she would sing to me when I was hurting and in the ICU.  She used to do that when I was a tiny little girl, and I think the scariest part about all of this is not being on a pediatric unit, not being guaranteed my mom can stay with me for every moment of every day.  No matter how much I’ve been through, I’m not ashamed to be vulnerable and cry for my mom or my stuffed “lovey,” or scream for higher pain meds.  This is going to be hard, but I hope the result is worth it.

Thanks for all of the cards and prayers. The cards are touching my heart, and the prayers are definitely felt.